On meeting Tom Simpson, one of the first things that strikes you is his ready wit and warm sense of humour. He has a polite and engaging manner and is quick to put people at their ease. Those qualities probably reflect his own experience of dealing with the public during his career as an optician – work he clearly loved, but which he has recently given up as his health has become less stable.

Tom is 48 and lives with his wife and two children in the harbour town of Stonehaven on the north east coast of Scotland. In August 2014, Tom was diagnosed with stage IV lung cancer. A biopsy revealed that his tumour carried a specific mutation, EGFR exon 19 deletion, indicating that he could benefit from a targeted therapy.

He is the third generation of his family to be affected by lung cancer, having lost both his father and grandfather to the disease. Not everyone knows how to react when they learn the news of a lung cancer diagnosis.

“My family were shocked. My wife obviously knew the full story from day one, but my children only found out quite some time later. People at work? Different. Some were shocked, some people don’t speak to you, so it does change depending on who you’re speaking to.

“Before my diagnosis, I knew nothing of lung cancer, other than my dad passed away with it – and so did my grandfather. But I didn’t know anything; I didn’t smoke and it wasn’t really a concern.

“Lung cancer is such an umbrella term – and it’s not really a good term. Some people will focus on the fact that some people smoked, some will focus on the fact that some people can be cured. I’m in the group that can’t be cured and didn’t smoke, which is something I only realised after I got involved with a few things such as Roy Castle”.

“An awful lot of people don’t survive lung cancer; an awful lot of people survive other forms of cancer that have been given funding. If more funding was given to lung cancer, more people would survive.”

Lung cancer only gets less than 5% of the amount spent on cancer research as a whole.

Inevitably, we come to the issue of the stigma relating to smoking – something every patient seems to confront. For the first time, Tom’s laughter has a bitter edge.

“I’m so tired of being asked whether I smoked. It’s a ridiculous question. It could just as easily be caused by diesel fumes, and in my case, I didn’t smoke and I got cancer. I wish people would stop asking me, but they don’t.

“I think the reason people assume you smoke is because it’s more of a concern for them if you didn’t smoke and you got lung cancer. They almost think they’re safe because they didn’t smoke”.

Tom is taking part in our #HeadHigh campaign for Lung Cancer Awareness Month in November 2017. He’s among those whose images will appear in a special calendar which is to be sent to MPs and key decision-makers. Tom is all for it.

“It’s really so important that this campaign reaches MPs, especially. I’m just one person, I can’t change things, but if you’re an MP, you can change things, and if you know more about it, you can make sure money goes to the right place.

“An awful lot of people don’t survive lung cancer; an awful lot of people survive other forms of cancer that have been given funding. If more funding was given to lung cancer, more people would survive, and it’s really up to the MPs – they’re the ones with their hands on the purse-strings that can sort this out.

“I want to be part of this calendar, not because I’m a model, but really because I don’t know what else to do. The fact is there’s medication out there but not made available for financial reasons – that’s a disgrace”.

Tom’s daughter Camille joined him for the photo-shoot:

“People really need to stop thinking that there’s only one to get lung cancer – and that it’s through smoking – because that makes people with lung cancer feel that they’re being blamed, like it’s their fault for getting it, but there are so many causes.

“Dad is spreading awareness to other people and trying to help. It makes me so proud. If I had to describe him in three words, they’d be: ‘smart, funny and selfless’.

Well said, Camille!